Cystic fibrosis (CF) advocate, author, Olympic torchbearer, and motivational speaker Andy Lipman didn’t get involved in the CF community — even though he himself had the disease — until a friend had him volunteer in a softball charity event.
The two young kids who spoke onstage that day changed Lipman’s mind about getting involved.
“I felt bad I hadn’t been doing any advocating up until that point,” he told Cystic Fibrosis News Today in a phone interview.
Twenty years later, the Wish for Wendy Foundation — inspired by Lipman’s older sister Wendy, who died 16 days after her birth in 1971 — has raised more than $4.5 million for the Cystic Fibrosis Foundation (CFF) to boost awareness of the disease and find a cure.
Lipman has also written four books. His latest, “The CF Warrior Project: 65 Stories of Triumph against Cystic Fibrosis,” was published in May 2019. He estimates thousands of copies have been sold so far. Proceeds will go to Wish for Wendy and other CF organizations.
He also penned “Alive at 25: How I’m Beating Cystic Fibrosis,” “The Drive At 35: The Long Road to Beating Cystic Fibrosis,” and a novel about a boy with CF and his goal to be a Major League Baseball player called “A Superhero Needs No Cape.”
Lipman was diagnosed as a child using the sweat test, which measures the salt content of sweat to determine whether someone has CF. When he was 9, he read an encyclopedia entry about the disease that indicated he would only live until 25.
The current median life expectancy is 38 for people with CF. The fertility rate for males with CF is around 2%.
Lipman has defied the odds on both counts. Now 46, he has two children — Avery, 13, and Ethan, 11 — with his wife, Andrea.
65 ‘special people’
Lipman hopes the CF Warrior Project will inspire people with CF — particularly children — to believe they can achieve whatever they set their minds to. He wants them to have a better outlook than he had as a child.
“Growing up, I just didn’t know a lot of people with CF, and I felt like I didn’t have a lot of hopes and dreams because of that,” Lipman said. “I love to give hope to parents with young CF children to let them know things are more possible than they even think.”
In the book, Lipman highlights people who have done impressive feats, such as Nick Talbot, 44, the first person with CF to summit Mount Everest; Madi Vanstone, 18, who lobbied the Canadian government to allow access to CF therapies; and Jesse Huygh, 28, an acrobat in a traveling circus in Europe.
Lipman interviewed more than 500 people for his latest book, which took him two and a half years to complete. The hardest part, he said, was whittling down those interviews to 65. That number is significant in the CF community because “65 Roses” is the term many children use to pronounce the name of their disease.
He couldn’t fit it all into one book, so Lipman has begun working on a second book in the CF Warrior Project. It will come out in the next 12–15 months.
Lipman said that what made the 65 people he profiled for the book special was their positive attitude, as well as their discipline to take their medication and do their exercises. He also noted their determination and generosity in giving back to the community.
Lipman’s own care routine requires him to be consistent with taking antibiotics, as well as supplements, hypertonic saline, and Pulmozyme (dornase alpha), a mucus-thinning treatment developed by Genentech. He also does vest treatments two to three times per day, and exercises frequently.
He recently added the newly approved CF therapy Trikafta, developed by Vertex Pharmaceuticals, to his routine. Clinical trials testing Trikafta — a triple-combo medication consisting of elexacaftor, tezacaftor, and ivacaftor — showed it increases lung capacity by 10–13 percentage points.
When working on the book, Lipman found that the greatest common denominator among the people he interviewed was their resilience. It took Talbot three tries to reach the top of Mount Everest; on his second attempt, an avalanche killed his friend, and he barely survived.
“It’s not just a book; it’s a movement,” said Lipman, who plans to add events to the CF Warrior Project. “Things are hopeful, and we want to show that with the people we spotlight.”
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